Did you find that you had any myths or fears of the medical establishment when you first started taking the meds?

I did not have any fear in taking the meds. Again, it goes back to knowledge. For me, so much of it goes back to getting informed, and knowledge, and understanding science and treatment, and those kinds of issues. For me, it always goes back to that fundamental question: Do you want to live or not? "Are you done?" is my question. At some point, I will determine that I'm done. Probably not related to HIV, but at some point, I'll determine that I'm done. And that I'm ready. So then I'll make decisions that are consistent with that. Right now, I have decided that I'm not done. So then there are decisions that are associated with that. One of those decisions is the need to take antiretrovirals, and to deal with whatever side effects come with them.

Well, what do people say to you? Because we've heard a lot of people saying, "Well, Magic Johnson has the cure," or they're saying, "HIV drugs kill you." I mean, some of the best-selling books, supposedly, on Amazon are these crazy books like, HIV doesn't cause AIDS, or the cure for AIDS is you jump up and down or something. So there's all that stuff out there. And people hear about it and they go, "Well, there's easy stuff. I could just jump on a trampoline. It's not contagious. I just read a book, and this professor, he's a Ph.D., he said so." So, since all that's out there, how do we counter that? Or is there any attempt being made?

Well, first of all, we counter that by building a mass movement, where people can get real facts and information that can save their lives, wherever they turn. And I think that this false information, these myths and misinformation, are borne out of a vacuum of information. So we develop more information, and we develop better ways of disseminating that information. I think that's certainly a real part of it.

Why do people turn there so quickly? It's because people are so anxious to be in denial. Because the truth of the matter is, on the questions of accountability and responsibility, that can be hard. Being in denial makes it so much easier. Because if I'm in denial, I don't have to deal with my own responsibility, and my own culpability. If I'm in denial, I can say that so-and-so infected me, as opposed to saying I knew that I should have used a condom. So if I'm in denial, then I don't have to be actively engaged in any way.

So I think that that contributes to it. Because people don't want to think of AIDS, because of the stigma, as something that they can take ownership of. But, quite frankly, taking ownership of [it] is the most important thing that any of us can do, for ourselves or for any organization that we're working with.

Is that what you do? I mean, is that how you survive with HIV all these years?

"Right. I think that part of my survival is that, you know, I've embraced my reality."

Right. I think that part of my survival is that, you know, I've embraced my reality. HIV is a part of me. It's not all of me. It's not the completeness of my identity. But it's a part of me. And I'm not trying to run away with it. It's one of the reasons why I say that AIDS in America today is a black disease. It's not only a black disease, but it is also a black disease. And black Americans have to confront that. Nobody wants to say that. Nobody wants to own that. Nobody wants to acknowledge that. And that silence is killing us. We talk about, well, if you call it a "black disease," that's going to stigmatize folks, and that's going to stereotype folks. And the other folks are going to go away.

Well, hello. The other folks have already gone away. Whether we call the truth or not, everybody can read the numbers. So who are we fooling here? What we're doing in our interest, in the interest of trying to engage an outside community that has already expressed that they're not interested in us, we are denying the truth about an epidemic, and forfeiting our ability to mobilize ourselves.

So, in any problem, there is the "them" and there's the "us." Now, maybe we can deal with the "them." But definitely, we have to deal with the "us." That's the way I approach my personal disease, and that's the way I approach the disease in my community.

Do I want the president to do more? Yes, I want the president to do more. Do I want the Congress to do more? Yes, I want the Congress to do more. Do I want corporations to do more? Yes, I want corporations to do more. Do I want non-profits to do more? Yes, I want non-profits to do more. But it doesn't matter what the government does, what the non-profits do, what the corporations do, if in fact we are not prepared to save ourselves. So the first and the foremost thing that we have to do is to say this disease is killing us. It is our problem. It is about our people. And the only way it's going to ever end is if we come up with solutions and we implement those solutions.

At the International AIDS Conference you did a revolutionary thing -- you managed to bring together all these black leaders to talk about HIV and plan for the future. How did you do this?

How did we get black leaders to respond to the AIDS epidemic, and to come to the World AIDS Conference this year? The first step is, we asked them to come. Secondly, we pointed out to them that, quite frankly, AIDS in America today is a black disease. The numbers bear it out. Twenty-five years into the epidemic, African Americans, no matter how you look at it, bear the brunt of this epidemic -- whether we're talking about men or women or gay or straight or young or old or rich or poor, educated or not educated, African Americans are disproportionately impacted.

"The only way to stop the HIV/AIDS epidemic in America is to stop the epidemic in black America."

The third issue is that today, almost all of our leaders know someone who is impacted, or infected, by HIV and AIDS. So it really was not difficult to get them to come to the International Conference. I think that we're at a unique point in time, and we're at that place in time when clearly African Americans have to respond to this epidemic. The only way to stop the HIV/AIDS epidemic in America is to stop the epidemic in black America. At the same time, I think our leaders and our institutions understand that, and they're ready to respond to the HIV/AIDS epidemic.

So let's review some of the numbers. I mostly got this from the amazing report put out by the Black AIDS Institute. In it are astonishing numbers: blacks are seven times more likely to die from AIDS once diagnosed; seven out of 10 states with the highest per capita AIDS rates are in the Southeast; eight out of 10 blacks in the state epidemic are in the South; of all African Americans living with HIV/AIDS, the primary transmission category was sexual contact with other men; of all African-American women living with HIV, the primary category was high risk, heterosexual contact; 50 percent of all new diagnoses are among African Americans. What struck me when I was reading your report was some of the dates; it was a long time ago that we discovered this.

"Black women have always represented the majority of the HIV/AIDS cases among women, going back as far as 1984."

Right. Exactly. The truth of the matter is that African Americans have been disproportionately impacted since the beginning of the epidemic. The AIDS epidemic was never, ever, ever a gay disease. Outside of the United States, particularly in developing countries, it has always been primarily a heterosexual disease, and black folks have always been disproportionately impacted. For example, today black women represent nearly 70 percent of the new HIV/AIDS cases among women. But black women have always represented the majority of the HIV/AIDS cases among women, going back as far as 1984. In 1984, African Americans represented 25 percent of the AIDS cases. Today, African Americans represent roughly 50 percent of the estimated 1.2 million Americans living with HIV and AIDS.

So it's not a new story, but people are now beginning to be aware of it. The tragedy is, if we had sounded the alarm properly in 1984 and 1985 and 1986, we wouldn't have the epidemic that we have today. That is why we have the sense of urgency that we have today, [why] we are demanding that our institutions, that our government, that our clergy, that our media, that anyone anywhere that has any interest in the welfare and health of black Americans, has to be talking about HIV and AIDS.

Does this mean magazines like Essence are starting to cover issues about HIV, or telling stories of women living with HIV?

Well, you know, the one institution -- well, not the one; I shouldn't say that -- but one of the institutions that I am most proud of in black America is black media. Black media has responded in a huge way, not only in the numbers of stories that they are writing and reporting about HIV/AIDS in black America, but the diversity of the subjects and the quality of the stories. You know, we have a major commitment by Essence magazine, and by Ebony, and by Jet, and by Upscale magazine, and by Heart & Soul magazine. We have the National Newspaper Publishers Associations. Quite frankly, all 250 black newspapers in America have made a commitment to cover HIV and AIDS in a robust way. Black radio, through the American Urban Radio Networks: 650 black radio stations around the country have made a significant commitment to cover HIV and AIDS.

So that is one angle, kind of what we call the drumbeat, or raising awareness, or sounding the alarm, that's going on. But black civil rights organizations, like Rainbow Push and Reverend Jesse Jackson, are stepping to the plate again. Reverend Jesse Jackson has been there before. But also the Urban League and the National Association for the Advancement of Colored People, the NAACP ... Mr. Bruce Gordon and Julian Bond both have made a major commitment.

What we're calling on to happen is for there to be a national mass black mobilization to fight AIDS. We're actually calling on, quite frankly, the ending of the AIDS epidemic in black America over the next five years. Not eradicating the virus -- we know we're nowhere close to that -- but we can do a number of things. We can dramatically cut the infection rates in our communities. We can dramatically increase the number of people who know their HIV status. We can dramatically increase the number of people who are HIV positive [and] who are in appropriate care. We can dramatically reduce the number of people who are getting infected every day.

"Because the story of HIV/AIDS in America is primarily a story of a lack of leadership."

Of the 40,000 new HIV/AIDS cases in this country, nearly 22,000 of them are black. So by getting our churches involved, and getting our civil rights organizations, and our fraternities, and our sororities, and our elected officials all engaged ... Because the story of HIV/AIDS in America is primarily a story of a lack of leadership. So we're calling on our leaders to lead; we're demanding our leaders to lead. We're saying that, as far as we're concerned, you don't have a role to play unless you include in your role what you're going to do about fighting HIV and AIDS. We also plan to take that into the dialogue around the presidential elections in 2008.

Why did this happen? What are some of the reasons black are affected by HIV/AIDS?

I think that we are where we are in HIV/AIDS in black America today for a number of reasons. One is that the disease was initially mischaracterized. It was characterized initially as a white, gay, male disease. So if you were not white, if you were not gay, if you were not male, it was not your problem. And that was a huge problem.

In addition, by characterizing the disease as a gay disease, it was then stigmatized, stigmatized more than it needed to be in the beginning. Black communities were slow to respond to the disease. HIV and AIDS is a disease of opportunity. So, kind of the whole saying of "while you were sleeping ..." kind of literally and figuratively, the AIDS epidemic was taking a hold in our communities. Because we were slow to respond to the AIDS epidemic, we allowed the virus to get to the point where we had high prevalence and high incidence in our communities.

"We have global health disparities in America today. Fewer black people have health insurance and fewer black people have access to primary health care."

Finally, we have HIV/AIDS health. We have global health disparities in America today. Fewer black people have health insurance and fewer black people have access to primary health care. Fewer black people have access to health education. And that exacerbated the problem of fighting HIV and AIDS in our communities.

I was wondering if you could talk about why the African-American community might be more at risk. Could you talk a little bit about prisons and the lack of condoms in prisons, and the lack of intravenous drug equipment in prisons, but the definite availability of intravenous drugs in prisons?

From "AIDS in Blackface -- 25 Years of an Epidemic"A publication from Black AIDS Institute (June 2006)Click here to enlarge

Certainly. People talk a lot about the issue around prisons and the spread of HIV in black communities. I think we need to do a lot more work on that particular subject. I don't think we know as much as we need to know about what is the real impact of the mass incarceration of black men, in particular, on the spread of HIV and AIDS.

Certainly, we're concerned that a percentage of black men go into prisons HIV negative, and they come out HIV positive. We're concerned that a percentage of black men go into prisons HIV positive because they're vulnerable. And their vulnerability is actually what gets them into prison to begin with -- because they're poor and they may be ... you know, a huge percentage of our prisons are now the new holding places for people who have addictions, and for people who have mental illnesses. And they are vulnerable to exposure to HIV.

So we are concerned about what's going on in prisons, and the fact that we're not testing prisoners, we're not providing treatment for prisoners, and we're certainly not providing appropriate discharge planning for prisoners.

The other issues dealing with HIV and AIDS ... you know, the issue around drug use ... we know that the second highest mode of transmission in black America is drug use. And the fact that we still have ineffective policies around risk reduction for drug users is absolutely criminal. The fact that our federal government does not fund and pay for needle exchange programs is absolutely criminal. We think that contributes to the spread of HIV in black America.

The thing at the end of the day is that the strategy for ending the AIDS epidemic in black America is not so complicated. It really isn't. It involves,

Number one: Making sure that people are getting informed, that they have the information they need to protect themselves and to seek treatment and to deal with stigma issues.

Number two: Is urging people to get tested. Knowing your HIV status. Too many African Americans find out that they are HIV positive at late stage.

Number three: Making sure that people have access to treatment. AIDS is no longer the automatic death sentence that it once was.

Number four: Getting people involved in fighting the epidemic.

The truth of the matter is that we all know someone with HIV and AIDS, but you wouldn't know it by our involvement. So what we [at the Black AIDS Institute are] trying to do is, we're trying to get every single person, not only [those] who are African American, but those folks who are interested in issues of importance to African Americans, to get engaged on this issue.

How can they do that?

Well, they can get engaged in a number of ways. Number one, any organization that they're involved in, they should make sure that that organization has an AIDS plan, or AIDS program or AIDS policy. Every civil rights organization in America should have a strategic action plan. Every fraternity and every sorority in America should have an AIDS strategic action plan. Every church at every corner should have an AIDS strategic action plan. So they can make sure that's going on. They can get tested themselves. They can make sure that their partners get tested for HIV and AIDS.

"One of the things that's shocking is that 30 percent of black women who are newly infected with HIV and AIDS do not know the risk factors of their partners."

You gave some statistics earlier about women. Well, one of the things that's shocking is that 30 percent of black women who are newly infected with HIV and AIDS do not know the risk factors of their partners. They don't know how they got infected. So that is really just a part of simple (quite frankly) public health. We're failing on simple public health messages.

But doesn't it also have to do with sort of the lack of power that women have in sexual relationships in general in America, and in the world?

Certainly. The whole issue around gender disparities and certainly power dynamics based on gender is something that we should be concerned about. But what I'm talking about is that we have women who aren't even asking the question. We're not helping them to even ask the question. We have women who, even though they know about HIV and AIDS, aren't even thinking about the question. So we need to do a lot more work around basic education of both men and women around HIV and AIDS.

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